Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014.
A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.

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Monday, 30 September 2013

Now I admire my Dad no end for being on the Intrawebz in his 80's, finding and reading my blog and getting down with the whole email thing.

I got an email from him this morning with a photo he treasures of me, in much the same way Mum treasured the weird blue Indian dress thing. Parents are weird.....

So, he has a coal-fired computer system and has sent it to me as a Word Document and I am not sure I have the heart to talk him through the whole PDF/JPEG/photo upload to a blog thing.

So if anyone has any clues how I can convert (in simple steps please) a Word Document that is nought but a photo, into an uploadable one on an Apple, without sucking my eyeballs out with bitty plungers or menacing my hair regrowth, I would be grateful.

For now, Dad, all I can do is reproduce another photo from that holiday. I am the one falling off the wind boat thingy. Dad is the one struggling hard to hold the camera still, whilst giggling and pretending to shout encouragement....

I love our NHS. The treatment *I* have received has been exemplary, kind, compassionate and free. What more could I ask? Sometimes I grumble, but hey, nobody's perfect.

But Mental Health - oh dear.

First a quick 101 on Bulimia and Death. Other medical dangers and complications can be found here:

"Bulimia can be a fatal disease. Mortality rates for eating disorders vary widely between studies, with sources listing anorexia nervosa deaths from .3% to 10%. One fairly new study compared the records of individuals who had been treated at specialized eating disorders clinics with the National Death Index. Their findings for crude mortality rates were: 4% for anorexia, 3.9% for bulimia, and 5.2% for EDNOS (Crow, 2009).

The most common causes of sudden death in bulimia are cardiac or respiratory arrest, the result of electrolyte imbalances from excessive purging. Electrolytes, which are minerals in the blood—like potassium, chloride and sodium—help maintain a regular heart rhythm, as well as the function of the muscles that enable the heart to pump and the lungs to breathe. When these chemicals are depleted due to purging—often made worse by weight loss and excessive water drinking—heart arrhythmia (irregular heartbeat) can occur. Since this can lead to sudden death, it is important to have blood tests to monitor electrolytes, and medical treatment if they are amiss. This danger resolves when proper health and nutrition are restored.

Less common causes of death in bulimia include choking, rupture of the esophagus or stomach, and suicide. Kidney failure is another possible life-threatening side-effect of prolonged low potassium (Mehler, 2010).

It is difficult, if not impossible, to know which bulimics are at greatest risk for developing any of these specific conditions. Certainly, the longer the bulimia continues, the greater the risk of cumulative damage. However, even someone who has only started to purge faces the possibility of serious physical consequences, even death."

You could probably guess by the moniker by Urgent Help Services are the emergency response team that swoop in like the SAS when there is a mental health crisis taking place. They TAKE CHARGE and help resolve the situation. How do I know?

It says so here:

So at what point, as a parent, do you lose faith in the system? Well, that would be about the time, over a year after a diagnosis of bulimia, no treatment except therapy, no guidelines, a lot of blame, a suicide attempt, severe self harm, binge and purge episodes up to 7 times a day, discussions about sectioning, a cocktail of drugs prescribed to a 14 year old and a panicked call to the UHS because the "family are in crisis", that the UHS turn up at your house and write you a care plan.

This care plan is for your 14 year old daughter, who has been bingeing and purging for over a year, has lost weight, is in trouble at school, has been suicidal, has self-harmed, has attacked her parents with a knife, who is SO obviously in serious mental distress and anguish and needs help and is at high risk of death from purgining:

So here it is

Two day menu agreed as N overwhelmed by A demands.
A and N to keep a diary of this. A can vomit twice a day. A to consider what else she can binge on to help reduce the overall food bill.
Family unsure if they can do this even for one day.

Dr H to liaise with school re As tiredness and health.
Dr H to contact N in two days time to review meal plan.
UHS to discuss two week admission with Dr G with dietary guidance

Yes. You have read it right. The Urgent Help Service "prescribed" an underweight bulimic child 2 vomits a day and asked her to consider what food she could binge on to help reduce the overall food bill.

I am sorry if this is putting you off your breakfast but somethings are best out in the open. If you are in a mental health crisis, would you want this kind of care?

When talking to Tim yesterday and discussing the ongoing repercussions of his motorbike accident, he said that the pain was so bad on Friday, he actually took a painkiller. Taking a paracetamol or an ibuprofen for us is akin to "giving in" and not holding that bottom lip firm, so this was BIG NEWS. It really must have hurt. I wonder if this attitude to pills is strangely unique to our family, or the English or just a personality make-up thing. HWISO's family are great pill poppers on the maternal side. They do love a nice pill and my f-i-l's breakfast pill time regime makes my eyes cross!

So, I have been on a low dose of steroids for a few weeks now and I admit to being a bit...well....alert and "fast with the comeback" - I call it witty. HWISO begs to differ sometimes. It has also meant that my sleep patterns have been a little odd. I have been up, blogging, chatting and researching most nights by 3 am and catch little kips during the day. I am totally exhausted by 8 pm and usually asleep by 8.30 pm. This is not helped at all by the whole constipation thing which has mucked up the natural rhythms - nuff said.

The upshot was that I decided to stop taking the steroids over the weekend as Em was coming home, with her lovely friend K and it would be good if I wasn't quite so.....witty.

BIG MISTAKE.

The pain and the swelling has been almost unmanageable. Almost. I even took a painkiller or two. I was also totally floored by fatigue - something that hasn't happened up until now. Every time I sat down I went to sleep, which completely took everyone by surprise, so they kept coming in to check I was alright, which made me witty again

The upshot of that is that I became very vulnerable and emotional and sensitive and had a complete meltdown with my daughter about a bag, which her friend had borrowed. Which was childish and silly. And petty.

And then the salt thing. I have been having chemo on an almost weekly basis since March now. One of the side effects of chemo on me is that everything tastes of salt. Even water. Some tastes cut through it momentarily - for about 30 seconds or so - but things like bread, potatoes, pasta just feel like I am ingesting a forkful of salt. This has been going on for such a long time that I had almost got used to it. Until last night. One mouthful of chicken salad and THAT WAS IT!

"I am sick of it. Just sick of it. I am so fed up with eating salt. I am never going to eat anything again!" (From me? Ironic huh?), flinging plate in sink and throwing fork on floor very very hard to punish fork. Bad bad fork.

Poor HWISO got out the mop and bucket (tissues) and started dab ineffectually at the puddles of self-pity running down my face. He has no solutions and, believe me, we've tried everything. So chemo today and another week of salt-eating. (I have now convinced myself that the cancer has spread to my pancreas, despite a clear scan three weeks, BTW).

If you or a loved one has been receiving less than adequate care, it is an emotional roller coaster. And you may well feel the need to justify and explain and blame.

So here's how we are learning to do it, when advocating for children.

Start with the GP records. You can request them. Then request the records from the other departments involved in the care - in our two current cases, CAMHS teams.

Then steel yourself, put on the kettle, open the Digestives, put on the Big Girls Pants.

Start with a timeline.

ON 2nd August - visit to GP Yada yada yada

And build a timeline.

Here's the hard bit....

Without additional notes from you.

Keep going back and adding in the timelines from all the other sources that come in - note down Care Plans, Core Assessments, notes of phone calls, visits to and from "specialists". See who talks to who and what they say behind you back and in front of your face.

With Mental Health teams they are "allowed" to withhold information they feel may be "detrimental" to the wellbeing of the patient and/or family. To be honest, if what they reveal is anything to go by, what they hold back must surely be the stuff of fantasy novels.....

Only once you have a timeline and a clear picture of what happened when, who said what, where the holes in the care are, etc can you then take a highlighter (Nelly) and a ranty pen (MF) and UNDERLINE THINGS IN BRIGHT PINK.
Then add your own notes and explanations in, preferably in another colour. But remember, you are the complainant. You do NOT have to justify your actions to the professionals. They have to justify their actions to you. YOU are not being investigated. They are....

Sunday, 29 September 2013

Courtesy of Laura Collins. And I have had lots of lovely birthday greetings. I must say that if it carries on like this, I shall be quite exhausted by the end of the month.

I had a lovely Sunday morning phone call with Tim, in Italy. We were talking a lot about throwing things away once they were broken and not, like Mum, putting random bits of wood and metal into boxes to be "fixed" later. I keep finding the most peculiar things in random boxes - yesterday's joy was a golf tee, two drawing pins, three material balls from a long lost "handicraft" project of the children's and two, obviously vital, bits of metal with a hardened half tube of superglue. Why? Tim spent an hour yesterday changing plugs and fuses on extension leads that were clearly faulty. He has now thrown them away. Which I hope will please his new house guest and helper, R (seen here on balcony outside local Pizza Restaurant - doncha wish the view from YOUR Pizza Hut was like that?).

We are arranging a family weekend in November when we three siblings are all going to try and get together (Tim is coming over for a couple of weeks - YAY) in Southwold. It will be lovely.

I am looking forward to chemo tomorrow as the shoulder is darn painful at the moment. Partly because I have been overusing it - I am hard at work with a new update on Nelly, but beginning to run out of swearwords. And partly because I keep rolling over on it in my sleep, despite a positive Berlin Wall of pillows to stop me doing it. One of the downsides of this cancer lark is not being able to roll over in your sleep like you used to. Sigh.

Autumn is definitely in the air and nights are drawing in. In a way, I am sad the summer is over. It has been lovely. But with autumn comes wood fires and cosy pjs. So I decided to take off the chipped nail polish from my toe nails. I wish I hadn't. As I have blogged before, one of the side effects of chemo is to destroy the nail beds sometimes and, at the end of the Docetaxal, my nails were extremely painful. Now the nail varnish has gone, I can see why. Let's just say, I have long nails on my tootsies and not much nail bed. Should I cut them?

I have been going through some of Mum's photos and almost crying about hair. I know. I know. I am obsessed with my hair. I just can't quite believe how bad some of my hair cuts were.

(Mum LOVED me in this outfit. She kept the photo. WHY?? There isn't even a dog in it)

*****In response to this blog I did some time ago, I received an email blog from a brave girl who had been there and her view from the inside. I have not edited. I love you MM. Just saying.****

Today

02:43

Sheppard Pratt is the firey hell of eating disorders. It is like shoving a claustrophobic in a closet.

You see, you take this child, however old they might be...just a child...a teen or kid, and you take them away from their parents, friends, boyfriends. And you group them with all kinds of mature people, some 30 years old, that can intimidate them. That's already enhancement of TWO anxiety disorders many people with anorexia most likely suffer from. Whether you believe it or not, anorexia, is basically sort of an anxiety disorder. It is the utter fear of weight gain.

So you're pulled away from your parents, seperation anxiety, grouped with tons of adults and people that are just fucking scary, rude, and judgmental and are not scolded whatsoever for doing so, social anxiety, and are shamed for having your eating disorder. Punished. It's your fault.

And if you don't gain a pound EACH day, (When your body can't even control that...), or finish your food within the alotted time (I believe it was about an hour...that was plenty for ME, but I'm a very fast eater, even in the midst of my ED, plus I was not conversational at the table, just focused on my food), you were stripped of all your priveledges: Including phone calls, a SHOWER, and visiting hours.

During my time at Sheppard, I ate every meal. Every single one. I did not refuse one meal. I always finished it within the hour.

It didn't matter.

In anorexia recovery, the body takes on a hyper-metabolism unlike any one I've ever known to exist. It's theorised that, in some cases nine thousand calories were required a day, simply to gain an ounce.

I ate EVERY meal. Every one.Yet, when my body else refused to comply and gain a pound a day, I was punished and had taken away what I'd eaten that entire meal for: the whole bloody point of eating - to see my parents.

I was punished for something I could not control.

I also could not shower. If I did not gain weight for three days, I could not shower for three days. You take this person, already DISGUSTED with themselves for whatever of the two reasons - for eating, or for the weight they've so far gained (if any), and you strip them of the human right to bathe. They walk around with greasy hair, smelling like god awful horse shit, and expect them to recover.

Sheppard Pratt is not only a cruel environment, but they are extremely uneducated in recovery.

****My blog yesterday seemed to produce a big reaction. I am delighted to publish this (and the picture! Dogs don't cause eating disorders, either but they can help in curing them!) ****

prej·u·dice (prj-ds)

n.

1.

a. An adverse judgment or opinion formed beforehand or without knowledge or
examination of the facts.

b. A preconceived preference or idea.

2. The act or state of holding unreasonable preconceived judgments or
convictions. See Synonyms at predilection.

3. Irrational suspicion or hatred of a particular group, race, or religion.

4. Detriment or injury caused to a person by the preconceived, unfavorable
conviction of another or others.

tr.v.prej·u·diced, prej·u·dic·ing, prej·u·dic·es

1. To cause (someone) to judge prematurely and irrationally. See Synonyms
at bias.

2. To affect injuriously or detrimentally by a judgment or an act.

Prejudice is rife in the eating disorder world, from the preconceived ideas of family and friends, to the clinicians. The media today is full of anti-obesity messages, dieting tips and advice, and photoshopped images. These messages begin to filter into our subconsciousness from a very early age, so that by the time we are in our early years of schooling children already associate fat with bad and lazy, thin with good and healthy. If we hear of eating disorders in the media it is often related to anorexia nervosa, and often related to how the media causes girls to want to look like models. It creates false ideas: that only girls get eating disorders, that the only eating disorder is anorexia, that it is a vanity disorder. Nothing could of course be further from the truth.

My daughter was diagnosed with anorexia nervosa in 2010. She was 13 and a half. I had watched her change from a girl who was tall and solidly built, to a very slim and average height child over several years without concern. I did not know about the missed meals and disordered eating that led to this. Although she had never been overweight I had fallen into the trap of thinking that thinner was better, so that when she took up regular running and eschewed fatty foods I still showed no concern. It was only when someone pointed out to me that she had lost weight that suddenly the rose coloured glasses were pulled away and I realised what was wrong. I had been concerned about her mood. She seemed depressed and distressed about school. It never occurred to me that perhaps these things were related until too late. It never entered my head that my daughter would get an eating disorder. If you followed the cardinal rules that just didn’t happen did it? I had been careful not to make food either a punishment or a reward. We ate main meals together. She ate a healthy diet, with occasional treats. We did not emphasize weight or appearance at home. My daughter has never been the victim of bullying. She had good friendship groups.

When those glasses were pulled away M was on the edge of plunging into the abyss. Within two months she would be admitted to hospital at death’s door. Again my own prejudices convinced me that she could be talked out of this. That just by telling her that she needed to stop losing weight, my previously very obedient child could absorb that, she would listen when I told her she needed to eat more. As things rapidly spiralled out of control we came into contact with a medical system full of its own prejudice.

The first doctor we went to see agreed M had an eating disorder. She did not seem overly concerned, so I took her lead. When we were referred to see a psychologist and dietician I accepted that this was routine and usual treatment. I assumed that treatment was usually successful, that it was readily available. I did not know that eating disorders take a very long time to recover from. What I have discovered is frightening.

Eating disorders are not rare illnesses. They have a high associated morbidity and mortality. There is no one treatment that works for everyone. Accessing treatment that is effective around the world is difficult. I have discovered that some people have access to great treatment others cannot access that same treatment because of where they live, they are the wrong weight, or having insufficient money. Health systems are organised without recognising the need for prompt and effective treatment. Families and patients frequently have to fight the prejudices of the system to get the treatment they deserve.

Then when they get to treatment they have to overcome more prejudice.

So what are the prejudices of treatment?

1. Weight does not determine if you have a severe eating disorder, nor does it determine the behaviours associated with that eating disorder.

Numerous times I have heard of people being refused treatment because they are their BMI is too high. Never mind the purging, the rapid weight loss, the self-harming and suicidal ideations.

2. Having an eating disorder is not a choice. Eating disorders are frequently counterintuitive. Trying to recover from an eating disorder often promotes severe anxiety. This anxiety can make people lie, be violent, and act in ways that they would not normally. Just because someone seems to be resisting treatment does not mean they don’t want treatment it may just mean they are terrified.

3. Some people who have an eating disorder have had difficult upbringings and childhoods. Most of them don’t. Delaying treatment of the disordered eating can cost lives, while a therapist spends time looking for the root cause. The same applies to those treatment providers who believe that someone will recover if only they can find God.

4. Not seeing the whole person. People with eating disorders can of course have any other medical condition as well. Never just assume a symptom is related to the disorder. Many patients report blinkers going on the minute their eating disorder is mentioned.

5. Weight recovery equals recovery from the eating disorder. Worse than this is achieving a minimally normal weight equals recovery. People naturally are all shapes and sizes. Clinicians seem to be as scared of an obesity epidemic as the media. For some reason many clinicians seem to think that setting target weights at the lowest end of a healthy weight range is for the best. They forget that everyone is an individual. By encouraging people to maintain weights that are unrealistic for the individual clinicians can maintain an eating disorder.

6. Withholding treatment. Imagine that you have not been eating for days because your anorexic thoughts tell you not to. You are weak, dizzy, feeling faint. Possibly thirsty because you have not drunk. You are taken to the Emergency Department by your family because they are concerned. You are admitted to hospital because you are physically compromised. Someone says to you, would you like something to eat? If you have anorexia nervosa, you will say no. It doesn’t matter how hungry you feel, how ill you are. The thoughts screaming inside your head will stop you from saying yes. So no food is given or encouraged. It is akin to not using insulin for diabetes because a child is scared of the needle. Resistance to treatment is common in eating disorders. This does not mean it should not be given (see point 2).

My daughter has experience each and every one of these prejudices on her journey with anorexia. The nurses in hospital who treated her as a naughty wilful child because of the distress associated with re-feeding. The psychologist who was looking for some childhood issue that was causing the extreme depression. The paediatric registrar who could not see that although M’s BMI was now normal, her refusal to eat was putting her at serious risk. The fear of the paediatrician to allow her weight past the 50th centile weight for height. The rheumatologist who assumed that her severe joint pains were related to some anxiety issue.

M has been the subject of my own preconceived ideas of what an eating disorder is and looks like, as well as those of her friends, teachers, other family members and acquaintances. I have learned from her, what I should not have needed to. As a whole we need to stop the prejudice against eating disorders, in the end it only makes things worse.

Me, being me, I have always been more drawn to Stephen Fry, with his darker side and I do admit to the hugest brain crush on him. But then came House. Oh my!

The underlying point of House is the whole "murder mystery/clever detective" - the murderer being the disease, the Holmes being House. Marvellous stuff. The whole point is to find out what is causing the lesions/boils/seizures etc and treat them with the right stuff and save the life of the patient. It usually ends happily ever after (sometimes minus a limb or two) and we all breathe a sigh of relief.

This is TV, after all.

But this is not what happens in real hospitals. In real hospitals, people come in with various illnesses, get treated with various medicines, according to various protocols and recover (hopefully without losing limbs). If you know what you are treating, you treat it right? I mean, if someone came in with a very dehydrated child, who was obviously thin, lethargic and discombobulated, you would think "Ah!Dehydration. Underweight. Let's hook her up to a heart monitor, rehydrate her, get some nutrition and go from there."

Then you go to your computer, put her name in, see she has a diagnosis of Anorexia Nervosa and down come the shutters.

"Because this child of 11 is so obviously starving herself to death because she has "control issues". Why has her father brought her in? Is he safe to be left alone with her? Where is her mother? She must be either overcontrolling or distant? There must be something wrong with that family if a child of 11 wants to be thin. Too much exposure to her mother's Vogue magazines I expect. I bet they watch America's Next Top Model. Still, it's the child's choice to be like this and the parent's fault. I haven't got time for this. I have really sick people to see to. All this attention seeking behaviour will just have to wait. If her father wants her rehydrated and fed, I will give him a Fortisip to feed her and order a glucose blood test. That should do it. Now I am off to look at the poor boy in No 4 who has a fish hook through his finger."

So we come back to, if you know what you are treating, you treat it.

In general medicine, nobody cares about an eating disorder patient or their family because they come loaded with the prejudices and KNOW that this is a choice by the patient and is mostly about their childhood and bad parenting. I mean everyone knows that, right? Let's leave it to the professionals - like the Child and Adolescent Mental Health teams. They will know what to do, right?

Well, no. It seems that with Eating Disorders, any treatment of physical symptoms is put on the back burner by most CAMHs teams, whilst they slice and dice a family to find out the "cause". Although treatment guidelines are clearly there and Dr Dasha Nicholls' wonderful team at Great Ormond Street will give you help over the phone, if necessary, it is so much more important to find the "psychological" cause of this, than to restore the patient to physical health. Urgent restoration of physical health is definitely a second priority, these days. Who cares if this child gets osteoporosis or her heart never develops properly?

This seems to be an endemic prejudice throughout the system, now. So children with eating disorders don't get the proper care they need, because they don't deserve it? I would certainly agree that this seems to be the current attitude within the Health System at the moment.

You don't believe me?

Tell that to the Dad, sitting right now in a hospital room, trying to persuade his 11 year old to at least drink something more than the 50ml of Dr Pepper that the hospital gave her to get her blood glucose levels "back up". That is all she has had to drink all day. She is still in her school uniform. It is 2.45 am.

AN EATING DISORDER IS NEVER A CHOICE.

It is a brain disorder/dysfunction. It is the result of an energy imbalance. It is a serious mental health condition. It is also a serious physical health condition. It needs urgent and immediate attention. It needs both the physical and mental problems treating - not one to the exclusion of the other.

At the wonderful Katie Gunn's MacMillan Coffee Morning, where I saw so many lovely friends. It was like drop off at Riddlesworth all over again. A million thanks to Ali for taking me.

The perfect bank manager - if everyone had you, bankers would be regarded as saints. I can't quite get over the fact that I was still in my pajamas screaming at my computer (which had frozen) and he seemed totally unperturbed....

Definition of a split second: The traffic lights to turn green and Mum to swearing at the car in front.

For Tim: recognise the expression on Mum's face.....

For the moment, I am crying my way through Nelly's paperwork in utter despair at the total ignorance permeating the Child and Adolescent Mental Health teams. Not only in the "poor relation", Eating Disorders - I have almost come to expect that.

However, when I see a special "column" on a UHS (Urgent Health - ie Mental Health Crisis Team) for "Systemic Area of Need Identified", I really do think the world has gone mad. We seem to be back to stopping the bleeding.

Thursday, 26 September 2013

We'll get the shocker out of the way first, shall we? You send your son for 6 weeks to South America on an amazingly educational and fun-filled trip, including the Amazon, Venezuela, the flora, the fauna, learning to drive a truck and what does he bring you back?

Why a Hat, of course.

So apart from the fact that it's a great chance to show off Tim's sparkly blue eyes (Note to self: send razor blades to Italy in the morning...), there has to be a story right?

Close to Tim's house, there resides a champion chilli grower. Tim was telling me that he been down there on Saturday but that he had wimped out of the "really hot" ones and bought a few of the second-layer-down-in-the-heat-thing. I still advised rubber gloves, sunglasses and washing the chopping board with lots of bleach and hot water. There was a sheepish pause. It was definitely not an Italian telephone connection pause, but a sheepish one.

“While wandering a deserted beach at dawn, stagnant in my work, I saw a man in the distance bending and throwing as he walked the endless stretch toward me. As he came near, I could see that he was throwing starfish, abandoned on the sand by the tide, back into the sea. When he was close enough I asked him why he was working so hard at this strange task. He said that the sun would dry the starfish and they would die. I said to him that I thought he was foolish. there were thousands of starfish on miles and miles of beach. One man alone could never make a difference. He smiled as he picked up the next starfish. Hurling it far into the sea he said, "It makes a difference for this one." I abandoned my writing and spent the morning throwing starfish.” ― Loren Eiseley

So we threw a few starfish back, one of them being my Mother in Scotland. Here are the two blogs relating to her case. We didn't just throw the starfish back willy nilly. We threw her back with a complaint letter and a lot of crossed fingers.

This particular one can be found here: CAMHS, Arrol Park, Ayr. The Consultant Psychiatrist, who seems to subscribe to refusing a second opinion, after a meeting with the child in 2011 and not since, one Dr J.G., the "magical thinker" Dr M.B., Clinical Psychologist, and latterly, Dr C.DC, Clinical Psychologist.

Just to say it worked and the wee child is now getting a proper assessment in a wonderful facility with total parental access by visit or phone (even at 3 am) - even a nurse to sit with her though the night to help with the nightmares, her own room, her own toys, her stuff and proper care. She is going to be safe, cared for, treated and her whole family are going to be involved in all this.

The tragic (and neglectful? lacking in Duty of Care?) thing is that it has taken nearly 3 years to get this second opinion. What price do you put on a child's life these days?

Needless to say, the CAMHs team talked for the first hour of the meeting and then left. Perhaps they knew they were wrong (?), but after putting A and her family through such torment (3 Child Protection hearings? Really?) to bolster their ego and try and "prove" themselves right with their feathers and beads theories and their Bunkum & Woo practices, they could have had the courtesy to listen to what the experts actually said. I pity any other family, if their child has an eating disorder, who is under the care of these people.

So many thanks to so many people:

Firstly, A, for letting me share her story and letting me boss her around mercilessly over this.

My middle of the night wanderings and ramblings seem to get more extreme. I was up and about early again this morning (3 a.m.), leaving messages for Bryan Lask on Linked-In about the Helix. (Do come and join us!). Thanks for your support, Bryan.

Chatting about Moonshine with friends on the East Coast, and dying with friends on the West Coast and medications with Dr B in Australia - all in an (early) morning's work.

Writing a long blog, writing a short blog, replying to emails, drinking tea, cuddling Uhu. By the time 7.15 am came (pill time), I was quite exhausted, so went back to bed for an hour instead. Hence why I am still in my pjs and Uggs and unshowered but I have managed to take the pills.

The medical stuff is so weird. Yesterday, I plucked up courage to show Laura my burn over Skype - it has been a week. She made that "brave but ice" face. It was horrid. This morning, the seroma swelling has almost gone, the burn is almost better and the overwhelming pressure on the tendon in my armpit has all but disappeared. That'll be the chemo then. Amazing stuff. I almost can't wait for Monday. Although I hate the weird steroid night hours, it is worth it to watch and feel the stuff work.

It also takes away a lot of the pain. I have more or less given up the morphine (unless being driven by sister-in-law???) and am happily surviving on Paracetamol and Ibruprofen. And antibiotics. And steroids. But hey, not everything is perfect.

So dying of cancer doesn't seem to be quite the awful dark pain-filled journey it is often portrayed to be, just now. It actually seems to be getting easier. Weird.

Wednesday, 25 September 2013

I have heard of Anorexia Nervosa and of Bulimia, I know (or think I know) that they are
mental health issues with physical consequence. Apart from knowing sketchy details of
how the conditions manifest themselves that is probably the sum total of my knowledge
and having no immediate, or known, contact with a sufferer, should that be where my
interaction with the conditions ends? This seemingly simple question however is one that
is answered by individuals depending upon their perspective on the issue. If they are a
sufferer or parent of a sufferer the likely response is that I should not be apathetic and
instead should get involved; if they are like me not involved the response would probably
be, I know all I need to know.

Having read the Charlotte’s Chatting and Chuntering blog for some time now I frequently
come across her ED writings and these are scattered with references to treatments,
hospitals and the like which reduces the likelihood of my reading the article through. This
is not through any reluctance to learn more but rather the lack of time to spend in
understanding everything she is trying to cover. I wonder if it is due to some sort of innate
reticence on the subject and whether or not I should take the time to learn more on the
topic. Having a child with a different long term condition I am well aware of the isolation
and frustration sufferer’s parents feel at the levels of obfuscation and humbug that the
medical fraternity can engender. The groups involved directly in any serious illness usually
revolve around the sufferers, their parents, their doctors, their specialists, the nursing staff
and last but by no means least the self help Internet groups and aligned charities. This is a
simplistic representation but it demonstrates how the broader chapter is not involved
except when they know someone who is a sufferer or their parent.

Charlotte’s charismatic leadership is inspiring and makes me question if being ignorant
about diagnosis, treatment and living with a condition is acceptable. In what is frequently
described as the digital age access to information is immediate and profound. Twenty five
years ago would have required a trip to a library with hours trying to find only the slimmest
of information. Today it is possible to read vast amounts of variable data from widely
diverse sources and perhaps be more confused than before. So should I make the effort to
understand everything about ED to get the most out of her blog? I think not. The key to
Charlotte’s blog is that it reaches parts that other blogs cannot. It should garner support
either financial or material from the wider pool of resources that are her readership. There
is no shame in ignorance and in an environment where information is readily available it is
easy to get more informed. The articles in the blog that I have found opaque are usually
acronym filled and looking them up can reveal some shocking websites (CAMH in
particular).

Going forward I will use Google where I need to and if it is a thread that I don’t wish to
follow I will look forward to the next one.

are now 16 and 17, we are still the proud owners of a baby gate in our house. Not anywhere sensible like the top of the stairs, to stop us middle agers tumbling down in the dark, when going for a midnight wee. Oh No.

We have one on the door between the kitchen and the snug. Why? Because we need to keep Pirate's food safe from the ravenous labradors and give him a chance to eat it.

Below is a picture of the shut gate and Uhu, who has been lying there staring at it very hard for at least 15 minutes. He is also whining - I suspect he is repeatedly saying "Open Sesame"....

Please note the floor is supposed to look like that. Lynne has been. Hurrah

After the comment about #computergeek not getting some of the more technical ed "fringe" stuff, I have suggested that we do a Q&A about it, as a joint blog. I am hoping he will take me up on the challenge. It could be fun.

I am also open to any other questions people want to ask and will answer them via the blog, if appropriate or I am able to - either about cancer treatment or eating disorders.

Charlotte's Helix has got off to a flying start. Thank you so much for all your support. I am loving the videos. Surefire way to get your video on there? Use a dog. Beat have very kindly set up a Just giving page especially for the Helix - big shout out to Susan Ringwood and her team.

I talked to the Sky News reporter yesterday. Lovely girl. I hope she wasn't too overwhelmed by talking to Laura and Cindy Bulik as well.

But but but the Big News is....

Lynne is back today. Clean sheets, clean kitchen floor, (I have managed the loos and the sinks...try cleaning a loo with the "wrong" hand....), sofa cushions plumped, dog hair removed from the corners of the room, war declared on the sticky patch just above the dishwasher, fridge not to make that squelching noise any more, the gentle purr of hoovering - I can hardly contain myself. Being now so very limited in the use of my right arm - I can't raise my elbow up much - it has been rather disempowering (English understatement) to realise how limited my life becomes and how carelessly reliant I am on using my right arm (or both arms) for everyday menial tasks.

Like cleaning your teeth without having to do it in a position that is likely to slip a disc. Brushing your hair AND looking in the mirror at the same time. Putting a mirror on the floor and trying it that way is not a solution - just saying. Brushing the labradors is easier and they squirm. Socks require sitting down. And I cannot bring myself to talk about either bra fastening or bottom wiping. And that's just the personal stuff.

So I spend a lot of time sitting down not actually doing much except in my virtual world.

So it was lovely to have so many visitors all in a block yesterday - MH with his tales of the South of France, pots and vineyards, Christine with supper and news, Sophia with her nutty things (so delish) and last of all, giggles with Tiff - gales of them. I was quite talked out by the time HWISO got home. In fact, so talked out that I let him watch football. I watched the Twitter feed. Are we the epitome of a very modern couple?

Another photo from the archives I think. Just to remind me that I once had hair worth brushing. I know I can be boring about it but, just now, I look a bit like I need a gentle haircut, as I have a sort of silver halo. I HATE the hairdressers. I would rather go to the dentist.